Thursday, 20 November 2014

Dysphagia: Difficulty swallowing. Usually indicative of a problem with the mechanisms controlling the movement of the mouth, throat, and/or esophagus. It is common in people with MS, can become a permanent manifestation of the disease, or be associated with a temporary relapse.

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It's been 2 weeks now, and after a choking-during-dinner episode, I thought I just had food stuck in my throat. It would pass in a couple days, I told myself.

But it hasn't, and it's getting worse.

It's a odd sensation. I can swallow, but I can't. Like my esophagus just won't allow food to move down it easily.

There could very well be something stuck in there, but there also might not. And these sensations I am feeling could be right-on-par nervous system damage.

Today I finally got the ball rolling and now have a series of appointments.

I start with a fluoroscopy next week, to watch the mechanics of how I actually swallow (on x-ray, which is actually pretty cool). I am waiting for an endoscopy to take a physical look down my esophagus as well.

But there's a wait for that. So if you, or anyone you know, is an ENT specialist, I am your new best friend. I pay in wine and (sometimes) useful parenting tips... Ha!

It's a frustrating process. Something is definitely not right. But is it my MS? It's highly likely, but who knows.

Sunday, 16 November 2014

I like to think it was because of the blog, but really, I think it was all that yellow. Two years of walks, and lots of lemons, to boot.

Not easy to ignore.

I was able to unofficially get involved over the past few years with TV spots, local newspaper interviews, the Action On MS campaign, and involvement with the International MS Federation.

But this weekend it finally came a little closer to home. Along with my new MS "bible" this was my official training. It was an intensive time full of presentations, people, mingling, chatting, and learning.

And lots of coffee. Plus a long nap.

So - what exactly do I do? It varies, and depends on what I am needed for. It can mean speaking to groups of people, or at events, to people with MS or without, speaking to the media or to government, and to be "a face" for the disease.

I have known the staff at the MS Society of BC since my diagnosis, and cannot say enough about them. But this was my first chance to meet Dr. Karen Lee, VP of Research for the MS Society of Canada. I follow her through social media, so feel fairly connected to the research and development in MS.

Listening to her speak about the actual stats on MS; the stats about research dollars, how they are allocated, and how they sometimes need to be spread thin, was something new for me.

The piece that hit me perhaps the hardest - discussing the prevalence of depression and mental health issues in people with MS.

Then comparing these people to those with ALS.

Two similar, yet different neurodegenerative diseases.

ALS has been in the media a lot recently with the ice bucket challenge. It is a disease that is typically radically more progressive than MS. It becomes more serious, more quickly. It is a terrifying disease.

However, as I learned, the rate of suicide is much higher in people with MS than with ALS. Simply because, unlike ALS (or, another example that was given to compare patient populations, cancer), absolutely no prognosis can be given to the patient. There are no estimates of when things will happen, or how bad things will get. There is no certainty at all.

I completely get this statistic, and the logic behind it, but was still shocked by it.

(So when I try and hit you all up for MS Walk donations in a few months, let's try and remember the other sides of MS - like mental health, and the great need for better support.)

It was a very worthwhile weekend for me. And I am so, so grateful to have this opportunity.